CMT and Running – Some Observations

I recently asked Coach T to shoot some simple videos of me running.  These were the first ever videos I have seen of myself running.

My first reaction?  Train wreck.

Two days later? I am a bit less sensitive to what I am seeing.  I hate the videos less.  And I see different things when I look at them. 

I have to thank my Twitter friend Isis for reminding me of one simple fact:

“Celebrate and be proud of your accomplishments.  While non-challenged people are sitting on a couch watching tv, here you are fighting to be able to do what you love and trying to get better, regardless of any disability.”

I guess Isis’ comment also highlights why the video was hard for me to watch.  It was the first time I have seen myself as others do when I run – a runner who struggles.  My nerve disease – well that is invisible to everyone but me.  Pretty much nobody ever notices anything wrong with me.  Even *I* don’t even notice anything wrong with me on most days.  But this video…  Well I guess it is the only outward sign that I have a condition that can be classified as a disability.

DH and Coach T both tell me all the time that I have improved so much in the last year of concentrated effort with my run, and with the work I have done on functional strength balance and stability.  I *do* feel so much stronger.  In general, when I am out running, I may have uncomfortable parts (I felt really tight on the day of the run video – probably due to the -1*C temperatures), but I feel stable and strong.  I feel more “in my legs” – if that makes sense.

The advantages of having videos of me running are huge.  I can understand what we are working to fix. I can see the minor adjustments in form to make, to great effect.

I have been able to pass the videos along to my neurophysiotherapist too, for her review, so that she can help me to improve my run with targeted rehab.  Right now we have been working on improving my toe flexibility and we also are trying to strengthen my left calf (I can’t really do calf lifts on my left side, for some bizarre reason).  According to Gita, in the video:

“You certainly look more symmetrical but I’ve got some ideas of how to improve your propulsion. It’ll be good to see how your transfer over your foot (and big toe) and calf strength has changed so we can progress you.”

That is the thing.  I have a nerve disease, I have not really run for a long time, and all of this is new for me.  All of this – swim, bike, run, strength building, stability work – all of it – is an experiment.  I go out, try things, find what works.  I push my limits, feel uncomfortable, consult doctors, physios and orthotists.  I seek new solutions and approaches.  I work with my coach and physio and sports therapist to stay mobile and to get stronger and to improve.  And I carry on.  Constantly pushing and challenging myself. 

I asked another of the research physiotherapists at the National Hospital for Neurology to help me to understand a recent study on CMT that had been published.  In November researchers at the University of Rome published a study which showed that patients with CMT1A (the nerve disease that I have) and low levels of impairment (like me) have a higher cost of energy when walking than healthy individuals.  According to Louise, the main findings were:

  • The CMT group walked significantly slower than the unaffected group at comfortable and fast walking speeds.
  • The step length of the CMT group was significantly shorter compared to the unaffected group only at the fast walking speed.
  • The CMT group had a significantly higher energy cost per unit of distance (uptake of oxygen per meter) for both comfortable and fast walking speeds compared to the unaffected group.
  • The CMT group had a higher heart rate per unit of distance (beats per meter) at slow and fast walking speeds compared to the unaffected group.

“To sum this up CMT1A patients have a lower walking economy, which means they walk slower, for a shorter duration and with a higher level of physical effort.”

The study seemed to confirm what I have been feeling – that even though I may move slower than others, I am using the same if not more energy when I run.  Running can really wipe out my energy reserves.  I have also found it really hard to make changes to my stride, specifically efforts to increase my stride length.  But I am doing it – it is just taking a long time.

I am convinced that with time and patience, I will develop and improve.  I just need to keep positive.  To focus on what I *can* do.  I need to resist the temptation to compare myself with others.  I need to remind myself that this is about being the best *I* can be.  I need to remember that the fact I *can* do this is achievement in its own right.

And If I forget to be positive? Please call me out.  Let me know.  I definitely have a tendancy to be hard on myself – especially when it comes to me and running!  So please help me by reminding me of my progress.  Help me to snap out of the negative.  Remind me of the positive things…  I really value the sense checks!

8 responses to “CMT and Running – Some Observations”

  1. This post really struck a cord with me.  I am sat watching ‘fat families’ whilst reading blogs.  These people aren’t that much bigger than me but what they eat is so much more than what I eat.  It makes me so angry at my PCOS.  But reading your post I am listening to a lady who mentally is where I want to be.  Rather than being angry I need to start working with it and pushing past it.  Thank you for the inspiration x

  2. Thank you Amy. It is not easy. Accepting limits is harder, it is harder still to try to beat them. I have so many days when I am frustrated. But I guess by focusing on the moments of progress, the way that I feel better, that is what keeps me going.  Good luck.

  3. I read your blog and I feel like I am reading about myself.  I’m 34 and was diagnosed with CMT at age 10.  My entire life I have felt held back by my disability.  I have dreams about being able to run again, which is something I haven’t done since around the time I was diagnosed.  Reading your story is so inspirational for me.  It gives me a bit of hope which is hard to come by when you get this diagnosis. 
    Recently, my husband and I started a fitness class at our gym where we walk/run on a treadmill while doing various strength training moves with dumbbells.  The first class I couldn’t even walk on the treadmill @a 2.7 for 5 min without holding on.  I went home so broken hearted and defeated.  Now 12 weeks later I can walk @ a 3.6 for 30 min and even jog for a minute or two.  Anyway, reading your story makes me want to achieve more and for the first time in a long while I feel like I can do it!

  4. I really enjoyed reading this post.  I have CMT1a also and struggle to remain fit. I have always thought (and have been told by runners) that running would be impossible for someone with my limitations.  Reading your post has inspired me to try anyway!


  5. I have CMT 1A as well and it’s nice to hear other peoples’ accounts on pushing through the CMT. I’m use to hearing gasps when I tell people that I have a nerve damage disease because I’ve learned to push my limitations.Every time I find a new area of physical activity that is very challenging for me, I become focused on making that activity easier. It started with dancing, then kickboxing, then weight training and cardio.. The great thing is I stay in great shape because my body thinks something as simple as running is like a marine boot camp workout if I haven’t perfected it for my body haha. I digress…It’s great to hear your pushing through, it really shows we aren’t alone in the struggles of the nerve damage.

  6. Are you wearing braces? If so, what is working for you? I am almost mirrored with comment #3 – 31 was diagnosed at 10. As a young teen I tried a number of orthotics/braces, and as an adult I’ve had reconstructive foot and ankle surgeries. I want so badly to learn to jog, but I can’t walk on a treadmill without holding on. I can’t feel myself in the space…so I have zero balance. Any suggestions?

  7. I’m 39 now and was only diagnosed two years ago. My neurologist told me I’d need to stop wearing high-heels and should avoid running. Partly because I stubbornly refused to let anyone other than me define what I can’t do, and partly because I really really love pretty shoes, it seemed like the only thing to do to really give my CMT the middle finger was to take up running. I started very slowly, and have had a couple of impressive spills, but I’m getting stronger all the time. I so understand your comment about feeling more ‘in my legs’ – inspiring to read your story and know I’m not the only one pushing through the obstacles. Next step capturing my gait on video perhaps!

    • Hi Thea! Thanks so much for your comment! Be assured you are not alone.

      Filming my gait was hugely helpful, and working with a gait running coach to activate my glutes and hamstrings. If you go only you can find many of the exercises I do regularly on my gait coach James’s website –

      Also, if you are on Facebook, search for the group CMTAthletes and I would be delighted to have you join us there. It is a very inspiring group who show the world just what can be done with CMT!

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